'People are worse off': NDIS funding gaps leave many without care in Victoria

Fifteen years ago Lara Irvine was travelling the world with her sister, tasting exotic foods in South-East Asia and, like most tourists in their early 20s, posing happily for photos with locals and landmarks.

Today, Ms Irvine is fed through a tube, her body being unable to digest the simplest of foods while her lungs function at 40 per cent capacity.

Despite this, she has fallen through the cracks of state and federal government programs, with her application to the National Disability Insurance Scheme (NDIS) being rejected and her access to at-home care no longer funded by the Victorian Government.

"Your classification with other agencies doesn't mean anything to the NDIS, so Centrelink classifies me as disabled, city council does," she said.

"None of those things I ever had any trouble getting, and there's a lot of hoops to jump through to get the disabled pension in the first place."

Confusion between medical condition and disability

Ms Irvine suffers from scleroderma, a chronic autoimmune disease in which the body produces too much collagen, preventing some organs from functioning properly and leaving the skin dry or hardened.

"I'm out of breath very quickly and … I have no energy ever. I've lost a lot of my muscle tone as well, so things like even getting out of chair I can struggle with," she said.

"It will end up killing me but I don't know when. It could be another 20 years, it could be two years."

While she has been on the Disability Support Pension for 10 years, Ms Irvine said her application to the NDIS was rejected because her illness is considered a medical condition, not a disability.

"I just don't have the energy or the strength to shop so I'm hoping for some kind of mobility device, maybe some adaptive technology around the home," she said.

"But I don't even know what I need. I need help to figure out what's the best way to approach this."

Hundreds of people falling through funding gaps

In January the Victorian Government began rolling back the Home and Community Care Program (HACC), which funds local councils to help people under the age of 65 find at-home support services such as cleaning, cooking and shopping.

Ballarat City councillor Amy Johnston said of the $507,000 in state funding previously allocated to her region, 73 per cent had been cut back this year, leaving about 200 people without those support services.

"Those services basically allow people to continue living independently in their home … otherwise it ends up costing the State Government more if these people have to go into full-time care," Cr Johnston said.

"Our ask is that the State Government actually reinstate that funding for a period of 12 months while we have those discussions with state and federal governments to ask who is actually going to provide that funding."

NDIS beyond 'teething problems', advocacy group says

Ms Irvine said her dealings with the NDIS had been full of mixed messages, and involved her having to go over the same information with different staff.

"You have to focus on all the worst parts of my life and all the things I'm not able to do anymore over and over and over again," she said.

While Ms Irvine has asked the NDIS to review its rejection of her application, Disabilities Advocacy Network Australia chief executive Mary Mallett said that process was fundamentally flawed.

"There is nothing in the legislation that says how long the [National Disability Insurance Agency] have to take to make a decision for an internal review, and the average time they've taken is 69 days," she said.

"Now that means people were waiting with no knowledge about what was happening with their issue."

Ms Mallett said problems with the rollout of the NDIS reflected communication issues between federal, state and local governments.

"It seems as if the State Government in Victoria really didn't do a proper stocktake of what services people with a disability were receiving, and then some kind of due diligence to make sure those people wouldn't miss out as NDIS rolled in," she said.

"There are significant numbers of people who at the moment are worse off."

A report from the Productivity Commission has recommended the NDIA publicly report on the number of reviews being undertaken, their timeframes, outcomes and stakeholder satisfaction with the process.

"Clients ineligible for NDIS will remain in the state-funded HACC Program for Young People (PYP)," Cr Lalios said.

"Some councils have raised concerns with the MAV that there may not be enough funding for clients remaining in PYP.

"We're in discussions with the State Government to ensure these vulnerable individuals do not fall through the cracks, and will be seeking a funding commitment to ensure councils can maintain services for these PYP clients."

Mr Foley was unavailable for comment.

There were more than 77,000 people under the age of 65 signed up to the program in 2013, with the State Government estimating that figure would drop to around 69,000 in the 2016-17 budget.